Like this:

Last week I had my check-up with the rheumatologist – an annual highlight of my social calendar, alongside sorting the car’s MOT and having a smear. As a rule, these appointments generally consist of 1 part disappointment: 1 part frustration: 2 parts total despondency. They go something like this:

I arrive at the hospital with a well-prepared list of questions – I’m feeling positive, in control and determined to be heard. I queue to get into the carpark, hand over a fresh pot of wee, get weighed and then wait. And wait. And wait. I eventually get summoned.

I sit, he asks ‘So how do you feel?’ and I answer ‘Terrible‘ (that’s always a given). He flicks his eyes across my notes and promptly declares that my bloods are looking good. Less than two minutes after entering the room I am leaving it. All my well-prepared questions are unasked and unanswered, my positivity is completely squashed and my ‘in control’ voice has been gagged and muted. I scuttle off to the ticket machine, often in tears and always fuming – at him for making me feel so unimportant, at my body for being so useless and at myself for not having the balls to speak up more.

Why consultants (particularly male ones) seem to have the ability to render me a pathetic, jibbering wreck who actually feels guilty for taking up their time, is a complete mystery to me. I think perhaps it’s the overpowering God complex they use to hypnotise patients with.

I wonder, do other people also feel ‘sshhhed’ into submission by all-knowing consultants, or is it just me? And what about male patients? Do they let themselves get steamrollered too? Answers on a postcard – or in the comments below!

Anyway, where was I? After a lengthy queue at the machine, I find out that once again I’m over the allocated ‘free’ parking time by 0.2 of a second, despite my appointment having only last two minutes. I also realise I don’t have enough coins to pay. So I leave the queue and join another, having to buy myself a muffin from the overpriced cafe just so I can get some change.

The muffin is invariably dry and totally inedible; it’s the final insult to an already depressing trip. The muffin ends up in the carpark bin, I promptly scrape the hubcap against the pavement while trying to negotiate the hairpin bend of the exit and then, low and behold, I see that the ticketing barrier is permanently up.

Like seriously? Is there anything more annoying than being made to pay for something that you don’t even have to?

On this last trip, for the first time, I decided to take my husband with me for back up. I thought perhaps this might counteract all that testosterone swirling around the room. I also wanted him to experience Dr Complete Lack of Bedside Manner for himself.

Sadly, on this appointment, it was not to be.

Being the last patient of the morning shift, Dr CLOBM (as I shall now refer to him) had decided to skip his customary two minutes with me and head off early. The first I was aware of this was when a registrar called me in and said he’d be filling in for Dr CLOBM as he’d been called away for a ‘meeting’. Had he heck, a meeting with his stomach perhaps. My husband had already clocked him in the corridor, heading for the exit and telling his medical student to go on and get them a table for lunch.

I know! What a bloody liberty! The man only has to see me once a year, couldn’t he have overcome his hunger pangs for the couple of minutes that he normally allows me? After all, there’s plenty of other things I’d also like to be doing with my precious energy rather than queueing up, giving wee, getting weighed and waiting.

As it turned out, he and his grumbling stomach had done me an almighty favour. As the fill-in registrar had not yet reached the lofty pay grade that causes ears to stop working, he actually took the time to listen to me and answer my questions. Even more of a revelation: he asked about the pain I’m in and, for the very first time, properly acknowledged my fibromyalgia. Halle-bloody-lujah.

He examined my hands (never happened before) and tested the fibromyalgia pressure points on my body (certainly never happened before; didn’t even know they were there). He also explained why my memory is currently shot to shit, and how and why my body wasn’t able to deal with the pain. He then referred me to the pain clinic.

Thank god Dr CLOBM had considered himself and his plate of foie gras and chips more important than seeing me that day. For the first time, I left the hospital feeling vaguely upbeat: not because I think I’m going to be ‘cured’ with revolutionary tips on pain management, but because I’d finally been allowed to have a voice.

When you live in a world ruled by chronic illness, where doctors control your drugs, your future and your fate, being ‘heard’ is a monumental achievement – as much as an achievement as when Armstrong went for a stroll on the moon.

So that’s one small step for (chronically ill) me, one giant leap for womankind.

Like this:

In the beginning, when God created the earth, Eve nicked Adam’s apple and I got diagnosed with Lupus, I stubbornly resisted every drug I was offered. I was adamant that I’d manage without – save for a few ibuprofen when things got extra tough.

Six months later, when Lupus started to dig the claws in a little deeper, I was still in denial. I was reluctant to set off down a road with no end in sight. I was scared to start a medication I might never come off.

Roll forward a decade and oh, how things have changed.

As the years have ticked past and the conditions and symptoms have started piling up around me, not only have I stopped counting the pills I take, I’ve even started begging for more. Surely, this is not good?

I think I’m becoming a bit of a junkie.

The trouble with taking bucket loads of tablets every day is that after a while you start knocking them back like Smarties. You also start getting rather slapdash about the whole affair.

I’ve definitely become far too blasé for my own liking. I know this because the other day when I pulled out my medication suitcase for the weekly decant, I clearly didn’t have my mind on the job. After the 126 pills were all in their allocated compartments, I shook out the ones I was due to take with breakfast.

That’s odd, I thought. I don’t remember them being that shade of green.

So I looked a little closer.

And….holy shit.

In place of the six white pills I take for vertigo every day, I’d somehow substituted them for six sleeping pills. Six sleeping pills that weren’t even the same size or colour – for that matter, they weren’t even in my current meds ‘line up’.

As cock-ups go that one could have been rather disastrous. I’m not entirely sure what that dosage of sleeping fairy dust would have done to me, but I’m pretty sure it wouldn’t have been good.

On the other end of the cock-up scale, I made a similar miscalculation that resulted in an entirely different outcome. The exact polar opposite of results, in fact.

A month or so ago, when trying to get an early nights sleep, my body was so wracked with pain that even the pressure of my bones resting on the memory foam mattress was making me feel nauseous. After unsuccessfully trying to levitate myself off the offending sheet, I reached into the bedside drawer with my one semi-functioning arm and fished out some extra painkillers.

Three long hours later and I was still laying there: eyes wide open in the dark and furiously trying to figure out what the hell was going on.

I tried hard to relax from my toes up to my temples – but was simply too annoyed at being awake. I tried counting leaping, sleep-inducing sheep – but was too irritated by their imagined bleating. I tried to think ‘mindfully’ – but was too wound up by my complete and utter lack of zen.

In the end, with a backward and ever so bitter glare at my sleeping, completely oblivious husband, I flounced off downstairs to the sofa with a pillow under my arm. There I lay, accompanied by the slightly perplexed dog and watching the mother of all tripe and trashy TV until well past 5.30am. I think at that point I passed out rather than fell asleep.

Later that day I discovered what went so very wrong. When scrabbling for pain relief in the dim glow of my phone screen, I had mistakenly grabbed at tablets containing caffeine. No big deal you’d think, but caffeine is a stimulant my body hasn’t consumed or experienced in over 15 bloody years. No wonder I’d felt wired.

Needless to say, I’ve now started to harness all of my powers of concentration when sorting my meds. I’m also pondering just how much I knock back.

I’d love to be able to wean myself off all of this toxic crap, but I don’t see how it would ever be possible, or if I’m brave enough to see how my body would even react.

Like this:

I think it’s true to say that all chronic illnesses have one symptom in common: Loneliness.

For me, it can be one of the worst symptoms of the lot, often battling it out with Pain and Fatigue to ‘win’ the day and get one over on me. For healthy, socially active and ‘other side of the bars’ people, it must seem odd that a state of mind could ever pull top trumps on a physical pain, but in many ways it does.

To understand how it’s probably best to dissect each symptom: surgical gloves at the ready!

Let’s start with Chronic Pain. In whatever wonderful form it takes, there’s no disputing that this one is unquestionably an evil bastard – unrelenting and utterly vindictive. It takes no prisoners and gives no time off for good behaviour. I won’t woffle on about just how bad Pain can be, as I’ve already covered that here. And here.

But Pain (in its simplest, non-chronic form) is a widely known entity. There isn’t a person alive today who hasn’t felt its wrath, from a grazed knee and pesky splinter to a twisted limb and broken bone. And let’s not forget childbirth – the mother of them all!

This shared understanding of Pain makes it socially acceptable: it can be openly discussed and easily emphasised with. No GP will ever panic if you tell them about Pain, they’ll just reach for the prescription pad (or keyboard, these days) and bombard you with drugs. In the case of Chronic Pain (or mine at least), most of these pain ‘killers’ barely scratch the surface; they’re as effective as a hit man with a cast iron moral compass. But at least for Pain there’s plenty of meds and it always makes me feel slightly proactive to pop a pill.

Unlike Pain, however, Chronic Fatigue has to be experienced to be truly understood. It is not the same as tiredness (that everyday, run-of-the-mill stuff that everyone feels) and nothing else compares. In my opinion, Fatigue is a powerful force for evil: The Dark Side, Dementors, Death Eaters and The Eye of Sauron all rolled into one. It’s impossibly hard to fathom for those with bounce and vigour and this makes empathy rather thin on the ground. There is some, however, as Fatigue can make you look like the walking dead and it’s obvious to all that you’re really not feeling great.

Sadly there are no pills for Chronic Fatigue, but it can (according to the ‘medically’ trained) be aided by rest. And taking it easy. And learning to pace yourself. Please just excuse me here while I roll my eyes. What all this Fatigue and resting and spending time on your own does lead to is… the actual point of this blog.

Loneliness: an entirely different type of beast and the Satan of Symptoms.

For me, Loneliness is something that sweeps in and out of my life, like an all-consuming surge of water in a particularly menacing storm. Whether it comes from nowhere or accompanies a flare, it always takes me completely unaware.

It creeps up on me whilst I’m focussing on Pain. It slinks into the room while I battle Fatigue, filling up every last bit of space until I feel I can’t breathe. It sits beside me when I’m resting, invading my thoughts and slowly drip feeding negativity into my brain. It’s as if the worst of my insecurities and crippling fears are joining forces, playing games with an already fragile mind.

It’s hardly a surprise that Loneliness stands shoulder to shoulder with Anxiety and Depression. They’re like a small coven of witches all hell-bent on dragging me down.

Yes, Loneliness is a bleak and terrible place to find yourself: dark and isolated and a million miles from everything that feels familiar. It has the ability to transform any environment, no matter how safe and secure and make it feel empty and odd. It’s the unsettling feeling that something is ever so slightly out of place, but you just can’t put your finger on what or why.

Loneliness for me is like looking out at the world from behind a set of bars. It’s seeing life carrying on around me, life carrying on without me. And however much love may surround me it doesn’t change the feeling that I am completely alone.

In part that’s because it’s true. Loneliness is something that I often feel and think about but very rarely discuss with anyone. Partly because I don’t want to cause offence to those who are always by my side and partly because I don’t think anyone else would really care. Maybe I’m wrong, but I don’t think so.

The worse part of Loneliness is feeling that it’s so damned obvious that everyone around me should be able to spot it. I really, really want someone to notice how I feel, but of course, it’s as invisible as all the other symptoms so no one ever will.

Even my rheumatologist doesn’t. He’s certainly never asked me whether I feel utterly alone with the collection of diseases it’s his job to treat; he couldn’t be less interested in my state of mind. All he wants it for me to take my meds, never query his opinion and turn up once or twice a year to be ticked off his ‘to see’ list. My new GP also steers clear of Loneliness. Maybe that’s because she can’t afford to open the floodgates and release the tidal wave of tears that’ll inevitably come. She knows it’ll be nigh on impossible to replug that dam in a 10-minute allocated NHS time slot.

So maybe my worst symptoms come down to how much understanding and empathy they evoke. This puts Loneliness on the winning podium as how can there be empathy for something when no one even knows it exists?

Like this:

This week I have been wiped out beyond all belief. Flared up, energy-less and completely lacking the will to blink.

If I were a car, the fuel lights would’ve been violently flashing for at least the last hundred miles. I’d be running on the remaining fumes of whatever it is that keeps me going. At the present that would be copious amounts of anti-inflammatories, green tea, bananas and blueberries.

It’s all the weather’s fault. This summer completely did me in, with its endless weeks of heat and sun – neither of which is my friend – followed by a burst of sub-Saharan temperatures that could have brought an African elephant to its knees. OK, admittedly I’m talking English summer here, so perhaps with a little perspective I should scratch the elephant and replace it with a cow. A very elderly cow. A very elderly cow with arthritic knees, severe heat stroke and terrible dehydration.

It’s a well-known fact that a summer in the UK usually involves three things: high expectations, endless rain and crushing disappointment. Anything over 15 degrees is met with shock and rapturous applause. Climb into the 20s and the glamping brigade comes out in force. Head towards the 30s and severe weather warnings begin. Creep up any higher and the roads start to melt. Literally, melt. Nudge north of 35 degrees and the country battens down and prepares for Armageddon.

Shock. Horror. This August the mercury actually hit 36 degrees. Across our green yellow and pleasant parched lands, the unmistakable raspy voice of Steven Tyler could be heard drifting through the still and stuffy air. “I Don’t Want to Miss a Thing” he warbled, on constant repeat. I humbly beg to differ, I could have happily missed the lot.

This sort of heat could cause even the spriteliest of people to wilt and fade – and then there’s me. I’m quite literally as far from spritely as it’s possible to be. Back in June sometime, my body clocked one look at the ongoing weather reports and threw its hands up in a panicked surrender. The next few months were brutal.

Roll forward to September and whilst the summer may have finished, the after-effects of that heat are like an unwelcome house guest. Lingering and annoying.

Once upon a time, a younger, healthier version of me used to laugh in the face of the hottest of suns and crack open another bottle of tanning oil to celebrate summer. (Clearly reckless and stupid by today’s standards, but normal back then.) Today it’s a different story that I keep having to learn the hard way: even the mildest of months + lupus/sjögren’s/fibromyalgia do not mix.

And so, there’ve been endless weeks of dizziness and headaches, plenty of staggering around the house, closed curtains and a hell of a lot of horizontal living. When your body renders you ‘not fit for purpose’ sometimes all you can do is sit, weep and wait the flare up out. From my makeshift bed on the sofa one week, I worked my way through the latest series of Poldark, two series of The Crown and half a season of Greys Anatomy. Plus Love Island, obviously. Even for a self-confessed TV addict such as myself, I have to admit this was pretty extreme viewing.

Sadly anyone with a chronic anything will tell you that watching TV as an invalid isn’t half as much fun as you’d think. By the end of that week when the sofa and I had (temporarily) parted ways, I was miserable, bored, lonely, restless, festering and what felt like mere hours away from the start of a bed sore.

Not being able to partake in the world around you is beyond completely pants. I hate it and resent it in equal measures. So yes, for me, I’m relieved the summer is now behind us. That being said, I have some sketchy recollections swimming around in my grey matter about how the winter is even worse. Arghhh.

The thought of clambering in and out of all those tight thermal layers, boots and heavy coats is already making my little Raynaud fingers curl up in dread.

Like this:

Chronic Pain is something of a curious companion. A very constant, curious companion.

When waking in the morning it’s already there. Bright-eyed, bushy-tailed and smirking in delight. Always perched at the end of your bed, double espresso in hand and impatiently tapping a foot. Just waiting to crack on and eager to ruin your day.

From eyes open to eyes shut, Pain makes everything you do a mission and the simplest of things a chore. Stairs turn into mountains and every walk feels like a trek. It’s there when you shower, cook, eat, drive, shop and rest. It pesters you when you’re working and turns your brain to fog. It mocks all attempts at exercise. It punishes you for weeks.

Like a lazy toddler who refuses to be put down, Pain hangs off necks causing knots to form and tendons to shriek. It clings to backs until muscles pull and ache. It grips hands in a vice, crushing fingers until colour drains and cramp sets in. It bounces off hips and sits astride shoulders, gripping temples and reigning blows down upon throbbing heads. It’s positively relentless. And an utter pain in the arse.

At the end of the day when you eventually collapse into bed, Pain is still there. Snuggled in like an unwanted spoon, weighing you down and wrapping around every painful limb. And then for its grand finale – the biggest insult of all.

By the time your eyelids are hanging down past your cheeks, blissful sleep doesn’t even come to save you. No sirree. Pain snores like a freight train, kicks the small of your back and hogs the entire duvet. So now, you’re utterly exhausted and completely wide awake, all at the same time. Painsomnia they call it. Possibly the worst hours of the entire 24-hour day. And that really is saying something.

Week after week, year after year Pain hangs around like a bad smell, just sat there waiting every morning. You can try drowning it in lavender scented bath water or drugging it with pills. You can count your breaths and be mindful or ‘downward dog’ it to death, but nothing really seems to work. No matter what you tell it or how loud you scream, rant and swear, it just smirks a little more and ramps it up another gear. To give Pain its dues, it certainly has commendable staying power and a very thick skin.

So yes, Chronic Pain is quite possibly the most curious, constant and loyal companion of them all. Just like cellulite or a very needy dog, come rain or shine, no matter what you do, it’s always there and it refuses to ever back off, take a break or budge.

Like this:

Oh dear god, it’s been more than a year since the last post. There’s so much tumbleweed drifting around this barren landscape I call a blog that I can barely beat a pathway through to the ‘New Post’ button.

I do seem to be making a terrible habit of avoiding my screen and I’m not even sure why. Every day I wake up with the very best of intentions. Every night I promise that the next day I’ll definitely do better. Procrastination in its finest form, I’m sure you’ll agree. Sadly this terrible lack of motivation seems to have infiltrated almost every aspect of my day-to-day life.

Much like a petulant, sulking teenager, one day, Motivation simply gave me a withering look, rolled its eyes and then disappeared under a festering duvet. Accompanied by (oh so easily led) Mojo, they both holed up in the dark, barely visible amongst piles of cushions, hoodies and assorted technology beginning with ‘i’. They blocked out the world (except for the WiFi, obvs) and slept like the dead, surviving on nothing more than carbs, Spotify and Netflix. Sunlight was met with shrieks, hygiene was minimal and conversations consisted of no more than one syllable. Earphones kept all pleads, threats or bribes at bay.

It was neither a battle or a war I could win. I’m a mother of a teenager, I knew that.

To make matters worse, at the exact time Motivation descended into pubescent hell, my ‘Oomph’ simultaneously went into hibernation overdrive and Creativity went AWOL – last official sighting, 28th May 2017. I put that last deserter down to writer’s block on a gargantuan scale. The Trump wall of writer’s block, if you will.

Like I said, this last year really has been procrastination in its finest form. To highlight just how bad it became, both my 2017 and 2018 New Year’s resolutions were to try to write more on my blog. That panned out, clearly.

Come to think of it, my other three resolutions for 2017 and 2018 also proved something of a non-starter. They were: to start exercising more (and when I say more I mean to actually start); to make the time to meditate (instead of watching trashy but extremely enjoyable TV); to sell everything I don’t need on Ebay. Needless to say, my yoga mat was last seen loitering on top of the wardrobe, my Headspace membership expired with an embarrassing lack of use and my Ebay account has been as badly neglected as this blog. Fail, fail and epic fail.

There is, naturally, a valid reason for all the tumbleweed and radio silence. It’s called life, and it’s mainly been shit. I’d go so far as to say that life has completely drained the last jot of energy out of me. If the last year was put on a spectrum ranging from ‘Rainbows and Unicorns’ through to ‘Complete and Utter Misery’, I’ve probably been hovering right around the ‘Big Dark Hole’ mark. That’s somewhere between ‘Up A Creek’ and ‘Where Exactly Is The Light At The End Of The Tunnel?’ Nope, not a flicker of a rainbow or a bleeding bloody unicorn insight.

Daily existence has mainly centred around pain, with some exhaustion, frustration, upheaval and therapy thrown in for good measure. Then there’s been the depression, with a side helping of despondency, debt and despair. Oh yes, and a little bit of death, like a sprinkle on top.

A right barrel of laughs it’s been. A ‘fed up/screw everything/ I give up’ type of year in which I just haven’t felt engaged enough with my brain to type anything worth reading. Certainly, nothing that you, most lovely reader, would want to digest. That said, other people’s misery does have a wonderfully warped way of giving perspective and cheering the soul, so perhaps I’ve done you all a massive disservice.

Anyhow, I’ve decided that things need to improve, at least on the blog front. So I’ve dragged a stinking Motivation and Mojo out from under the duvet and slung them in the shower. Oomph has been given a triple espresso and Creativity has been frogmarched back from the wilderness and shackled to the keyboard. Now we’ll just have to see how that all goes.

So thank you – to everyone who hasn’t unfollowed me, to all those who’ve recently shown their support and for the truly lovely comments that have helped to remind me why I started the blog in the first place. It’s a mixture of all of the above and my therapist’s steel-capped boot up my backside that’s (hopefully) got me back on track.

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Disclaimer:

Please be advised the author of this blog has no medical training. If you have any questions regarding SLE, including but not limited to diagnosis, treatment, and living with the disease, you should please contact a medical professional.